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Renee
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Screwed up on Topamax
« on: Mar 5th, 2004, 11:47pm » |
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Let's see if I can make this make sense.
I started Topamax on Tues night...today I'm all f'ed up! I can't remember nuttin'. I'm disoriented, confused, extreme muscle weakness, I hear things but can't respond or at least in a way that makes sense, etc.
Talked to neuro and she said to stop the topamax immediately and come see her tuesday although i've not had my mri/mra as of yet.
I'm scared that I'm running out of meds. The following are no longer options for me because of side effects:
Verapamil
Lithium
Neurontin
Topamax
Imitrex is no longer working either.
Has anyone else had such bad side effects such as the disorientation, slurred speech, etc. and dry mouth on topamax?
This stuff makes me feel worse than having the flu.
ugh!! 
Renee
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Lizzie2
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Re: Screwed up on Topamax
« Reply #1 on: Mar 6th, 2004, 12:15am » |
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Yes...for some people it's just not a good mix.
I have what appears to be a very long lasting memory and concentration problem because of taking topamax. I stopped it quite awhile ago, and I am still having the problems I had while on it. Maybe it's because I was on it for about 2 years or so.
Good that your doctor will see you soon. Don't worry about running out of options...they always manage to find things to try. I have thought I have run out of options on many many occasions, only to have my neuro suggest something new. And the new doc I'm seeing mentioned about 5 meds that I've never even heard of!
Hang in there!
Lizzie
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Kevin_M
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Re: Screwed up on Topamax
« Reply #2 on: Mar 6th, 2004, 12:28am » |
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Thank you Renee,
I was extremely grateful for your post. My new doc says when we need to step it up, she wants to go to topamax. I am not for it at all.
Really sorry to hear of the lack of success from many of the old stand-bys. I am glad you voiced your displeasure and extreme uncomfortableness about it to your neuro, and that she will see you Tuesday. Hope that will not be long for you.
Please vent anything, anytime. We'll be here for you, standing by. Wishing for a merciful cloud to surround you. Hold hope in your mind in spite of what is transpiring. There is an answer for you. You have friends who care for you and are feeling your concern. We have a place in our hearts for you and would take the beast from you if we could. Warm embracing vibes for you.
Kevin M
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Tiannia
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Re: Screwed up on Topamax
« Reply #3 on: Mar 6th, 2004, 3:51am » |
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Renee - Topomax and I where a very bag mix. Within 24 hours of taking it my stomach was cramping all of the muscles felt like I had gotten the shit beat out of me, I was throwing up. Even went to the er and was told that I had food poisoning or the flu. But after 7 days and I was still in the same shape is when the doc finally said get off the topomax. I couldnt think. I mean it was like the words where there in my head but I couldnot spit them out. I felt grogy, like I was in a cloud.
Sounds like you had a dimilar time with it.
Sorry, hope they can figure out something for you.
Tiannia
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pubgirl
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Renee
I'm sorry you are feeling so crappy. Hope the topamax effects wear off soon. It sounds like you are very sensitive to the effects of any drug you take.
Probably a stoopid question, but what about 02? No really worrying side effects with that.
Wendy
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Renee
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Re: Screwed up on Topamax
« Reply #5 on: Mar 6th, 2004, 8:57am » |
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I have o2 with me at 15lpm and non-rebreather mask and i take indomethacin. i need a preventative that won't knock me off my feet and make me lose myself in the clouds.
still a bit woozy today
renee
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Edski_1
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Re: Screwed up on Topamax
« Reply #6 on: Mar 6th, 2004, 2:51pm » |
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Some people can't take the side effects of Topamax, and it's generally obvious pretty quickly. You are probably better off getting off it ssoner than later, as the sides can be pretty bad if you are over sensitive.
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Lobster
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Re: Screwed up on Topamax
« Reply #7 on: Mar 6th, 2004, 4:00pm » |
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Renee...
What was your dosage? Did you taper it up?
I ask because my doctor started me on Topa about a week ago with what I thought was a brutally slow taper up. 10 days at 25mg, then up from there.
Rock
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Giovanni
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Re: Screwed up on Topamax
« Reply #8 on: Mar 6th, 2004, 4:37pm » |
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I was a total Zombie. Had to come off of it.
John
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broomhilda
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Re: Screwed up on Topamax
« Reply #9 on: Mar 6th, 2004, 7:47pm » |
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Renee, I had a terrible time with it as well, nausea and short term memory loss along with many other side effects on 75 mgs. I tpared off very slowly and hope you do as well and the effects wear off soon, it took a few days for me!
I hope you can find relief real soon with something you can tolerate and brings you peace and pf days.
Thinking of you!
Andrea
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Suck it up Princess...
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MarkV2
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Re: Screwed up on Topamax
« Reply #10 on: Mar 6th, 2004, 9:04pm » |
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Quote:I have what appears to be a very long lasting memory and concentration problem because of taking topamax. I stopped it quite awhile ago, and I am still having the problems I had while on it. Maybe it's because I was on it for about 2 years or so.
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Lizzie, how long have you stopped? I was on 100mg for a year. I tapered off of it over the last 20 days and am still feeling memory and concentration problems too, although not as bad as when on it.
Thanks,
Mark
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Samantha_Smith
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Re: Screwed up on Topamax
« Reply #11 on: Mar 6th, 2004, 9:43pm » |
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I tried it at a very low dose for two days. My muscles ached so bad that I stopped taking it.
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toader
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Re: Screwed up on Topamax
« Reply #12 on: Mar 7th, 2004, 12:33am » |
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Renee,
This may sound stupid, but what are your symptoms?
I went to see a new neuro this past week and she spent an hour with me (my last one only spent five minutes tops). I have constant dull headaches that never go away on my left side - pain level 4-5. I also have the cluster attacks around my left eye and down the left side of my face which come and go. Some days I have none. Some days I have 5+.
She told me the constant dull headaches are not typical with clusters. There is another term for it (which I conveniently forgot - THANK YOU TOPOMAX) and prescribed Inomethicin for it. I say this just in case you don't have "classic" cluster symptoms - maybe that's what you aren't responding to these drugs. Just a thought.
I'm also on Topomax (which I bloody hate for all the reasons you describe). I've put up with it just because the cluster pain was so extreme. But now she's weaning me off. Yes, you do get used to the stupid effects *somewhat*. But the thirst - no. Slurred speech - no. Basically, it will bother you - so I don't blame you for not wanting to go there.
Usually Verapamil is by far the drug of choice. What are the side effects are you experiencing? This in combination with another drug is usually the "cocktail" that works.
Depakote is another possibility. Have you tried Melatonin? I guess Gabetril + Zonegran is another, less used combination that some have tried as well. Somebody already mentioned Oxygen.
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Renee
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Re: Screwed up on Topamax
« Reply #13 on: Mar 7th, 2004, 9:39am » |
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ok....don't laugh but I was only on 15mg at bedtime for 3 days when the side effects hit. I'm also very susceptible to side effects of meds and I don't require high doses either. I'm the type that falls asleep on 2 aleve if no ch.
My muscles were aching also and extremely weak. I was getting involuntary large twitches of major muscles also where i would just be sitting here and my arm would move or my leg would just move on it's own.
Toader,
chronic paroximal hemicrania is a variant of ch, which i also suffer from, and indomethacin is the drug of choice, which I also take. This sounds like what you are dealing with! It is better known as CPH.
Side effects of verap was it dropped my b/p to extremely low levels. I already have 90/60 for normal b/p and the verap dropped me into serious low b/p. I've tried the gabatril also...no help to me either.
i'll see my neuro on tuesday and see if there is some new drug out there that I can take. If not, I'm off to NEHC and gonna let them try and beat this demon.
pf24/7 vibes to all
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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mynm156
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Re: Screwed up on Topamax
« Reply #14 on: Apr 17th, 2004, 1:34pm » |
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YES!!!!
ME TOO! I am HAVING THE EXACT SAME RESPONSES! I HAVE A WIEGHT PROBLEM AND SOME SLEEP APNEA SO I WAS EXCITED THAT I MIGHT LOSE SOME WIEGHT WITH THIS DRUG TOO.
OH WELL
GOOD LUCK TO YOU
I WILL LOOK U UP IF I FIND A MIRACLE
MYNM156
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HypnoticFreddy
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Re: Screwed up on Topamax
« Reply #15 on: Apr 17th, 2004, 6:20pm » |
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MYNM156,
I have been posting a lot lately on Topamax. It stopped my cycle dead in its tracks 18 days ago.
For a lot of people, its side-effects are simply intolerable.
There can be a lot of them too.
For me, I just got tingling. I am sorry it didn't work for you. For me it has truly been a wonder drug.
-Scott
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pubgirl
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Re: Screwed up on Topamax
« Reply #16 on: Apr 18th, 2004, 5:28am » |
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Just for clarification and to put right some misinformation in this thread, a constant dull headache is definitely NOT one of the symptoms of PH/CPH (paroxysmal hemicrania). The opposite is true, it is short lasting, one-sided, violent pain.
Also PH/CPH is not a variant of CH. They are very different conditions, with different treatments.
If anyone thinks they may have one of the other TAC's (Trigeminal autonomic cephalgias) of which CH is only one, I suggest they read the articles in the OUCH library and try and match their symptoms there.
This is vital if it is possible you have PH/CPH as this particular TAC is 100% responsive to Indomethacin where CH isn't.
Wendy
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Nad
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Re: Screwed up on Topamax
« Reply #17 on: Apr 19th, 2004, 1:30pm » |
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Hi Renee,
I took Topamax for no longer than 1 week starting with 25 mg pro day and builded it up to 50 mg pro day.
In that time I became jumpy as hell, I couldn't sit still for 5 minutes (my house never has been so clean, neither has my workspace).
Everything tasted different and a lot af thing kind of felt like they exploded in my mouth.
My speech wasn't very clear and my words got twisted. The worst thing was that I became a real 'bully' in traffic, in words not in deads (yet) and that I had problems with telling what thing were or weren't moving when I wasn't (could be because I have no depthvision).
I'm not sure this was all from the Topalax or from the combination of the Topiramate (Topamax) with the Verapamil and the Lithium.
Anyway, Renee your certainly not the only one! 
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rbmb
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Re: Screwed up on Topamax
« Reply #18 on: Apr 19th, 2004, 2:46pm » |
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I suffered from forgetfulness and difficulty concentrating but no physical side effects (other than some tingling in hands) while taking topomax. The side effects were worst at first and seemed to diminish in time.....the max dosage I took was 150 mg a day. Topomax is the most effective preventative med I've taken for CH (and I've taken most of them),although it seemed to lose it's effectiveness after about a month or so. I never increased the doseage beyond 150 mg. My 2 cents.
Rich
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Tom
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Re: Screwed up on Topamax
« Reply #19 on: Apr 19th, 2004, 6:14pm » |
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from Toader's post:
«She told me the constant dull headaches are not typical with clusters. There is another term for it (which I conveniently forgot - THANK YOU TOPOMAX) and prescribed Inomethicin for it».
Wendy, among the TACs there is also the Hemicrania continua, and Toader's doc was probably thinking of that, and she could have been right with it. Thus she prescribed indomethacin, which doesn't only help PPH/CPH:
http://www.ninds.nih.gov/health_and_medical/disorders/hemicrania_continu a.htm
What is Hemicrania Continua?
Hemicrania continua is a rare form of chronic headache marked by continuous pain on one side of the face that varies in severity. Superimposed on the continuous but fluctuating pain are occasional attacks of more severe pain. Symptoms fall into two main categories: autonomic, including runny nose, tearing, eye redness, eye discomfort, sweating, and swollen and drooping eyelids; and migraine-like, including nausea, vomiting, and sensitivity to light and sound. The disorder has two forms: continuous, with daily headaches, and remitting, where headaches may occur for as long as 6 months and are followed by a pain-free period of weeks to months until they recur. Most patients experience attacks of increased pain three to five times per 24-hour cycle. This disorder is more common in women than in men. Physical exertion and alcohol use may increase the severity of headache pain in some patients. The cause of this disorder is unknown.
Is there any treatment?
Indomethacin, a non-steroidal anti-inflammatory drug (NSAID), usually provides rapid relief from symptoms. Other NSAIDs, including ibuprofen, celecoxib, rofecoxib and naproxen, can provide some relief from symptoms. Amitriptyline and other tricyclic antidepressants are effective in some patients.
What is the prognosis?
Patients may obtain complete to near-complete relief of symptoms with proper medical attention and daily medication. Some patients may not be able to tolerate long-term use of indomethacin and may have to rely on less effective NSAIDs.
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Thomas
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sandie99
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Re: Screwed up on Topamax
« Reply #20 on: Apr 20th, 2004, 10:48am » |
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Sorry to hear that, Renee... 
But I am glad that to told us that. Hmmm... when I start topamax, things start to get interesting. I already have a vivid imagination; I'll probably go nuts!
I hope they'll find you another med that actually works - without that bad side effects.
Best wishes,
sandie99
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HypnoticFreddy
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Re: Screwed up on Topamax
« Reply #21 on: Apr 20th, 2004, 11:48am » |
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I tells ya. Topamax has been my messiah, but my fingers are tingling to the MAX (no pun intended). It is really annoying, but I'd take this over a CH anyday.
Again, most people have problems with cognitive side effects. The fogginess, etc.
Me, I am always in the fog (as I have said). So I don't know the difference. Where am I?
-Scott
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toader
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Re: Screwed up on Topamax
« Reply #22 on: Apr 20th, 2004, 4:25pm » |
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be patient. . . side effects will pass with time and you will one day long for those tingly intimate moments you used to share with Garfield before you returned to your boring old intelligent self 
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pubgirl
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Re: Screwed up on Topamax
« Reply #23 on: Apr 20th, 2004, 6:35pm » |
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Tom
You could be right, and Indomethacin is in my opinion a much underused diagnostic rule out of several conditions. I know about hemicrania continua, but the attacks that superimpose over the constant lower level pain are shortlived with continua, much shorter than CH attacks.
I talk to quite a lot of sufferers who have the constant daily headache, with superimposed cluster level and duration attacks. For most of them, they seem to get effective treatment for the acute attacks, but trouble finding the right help for the daily syndrome. Several were wrongly diagnosed with continua, and indomethacin was ineffective. Has to be tried though!
Wendy
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maokitty
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Re: Screwed up on Topamax
« Reply #24 on: Apr 20th, 2004, 7:23pm » |
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This is what I have to look foward to? Seizures and memory loss? My neurologist never said a word about that. Only told me to take 1 25mg before bedtime. Not a word about tapering up. Nothing about possible retinal bleeding and I have border line glaucoma.
Does anyone know a good Neurologist in Fort Lauderdale Florida area. Looks like a need a new doctor.
Amerge was working well but was told I could not take indefinetly. [flash=200,200][/flash]
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You can sympathize you get tension headaches? Yeah kiss my butt!
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